Charles

I use and have been using supplemental oxygen for about four years now. When i go shopping i take my portable unit. I start at 2L but usually have to move it to 4 or 5 as the shopping continues. Anywhere between 2 to 3 hours. When i am back in the car to go home, i start backing it up to eventually get to my original 2L. If i didn’t take my…[Read more]

Hi Maria. First, and not trying to be negative, but there isn’t a pulmonologist that is worth their salt. A good one is as elusive as the correct spelling of the word pulmonologist. Can’t even find a correct spelling for it in a dictionary or even spellcheck. For what ever the reason they are not up on the many different things that are out there…[Read more]

Robert, just about everything that you have described about your mother is pretty much in line with this shit disease, IPF. Have you tried the med, OFEV? It does not cure, but it is suppose to prolong the inevitable. I was diagnosed in late 2013 and am still huffing and puffing my way through life. I really believe that the OFEV has given me some…[Read more]

GO GIRL GO! Get crackin and find a cure for all of us. chuck

Hi GratefulDeb.
Try Boehringer Ingelheim They have a “BI Cares Patient Assistance Program” for OFEV. PO BOX 5637 Louisville KY 40255. Phone number is 1 855 297 5906 or fax number 1 855 297 5907. They are great people there. I have been on their program for years. Just need to renew annually. I am on social Security and qualify for the OFEV at no…[Read more]

Thanks Rhonda for your input. I see my Pulmonologist tomorrow (Friday) and will ask her about the laser stuff. Chuck

Hi ya’ll, My nephew has found a Quinear at the Sinoriko store that has a Red Light therapy device and it reads 13 pcs X 650n power +4 timer that’s handheld. Does that sound like what you all are talking about?
Chuck

I am Chuck and i was diagnosed in 2013. I am 81 in 5 days. I have been on OFEV for the last 5 years or so and really believe that it has been very helpful. Hope that this helps.

Sorry for the loss. I am not far from that myself. Hope she went peacefully.
Chuck Gerson

Fortunately i don’t live where there is temperatures like that. But it does get cold. When i get into any type of chilly temps i start coughing a lot. Does anyone have that problem and if so, any antidote for it? Chuck Gerson from Cambria Ca.

Hi ya’ll, it’s Chuck again. 11/15/22 I had read that article from Cedar Sinai about 3 or 4 months ago when it had come out. I started taking 25 mg since then and still do. I personally do not see any chance, but a recent ct scan showed very little progress of my IPF, which by the way i was detected in late 2013. My pulmonologist has no opinion on…[Read more]

Hi to everyone. I was originally going to reply to Pam at the very top, but after reading so many of these remarks, i guess what i have to say is for all of you die hards. (Pardon the pun!) I was diagnosed in late 2013 and was told the same as you all have been told, or if you are from the south, ya’ll have been told. 3-5 years. I lived at 6000…[Read more]

Natalie, there is a company called “SupercareHealth”. 1 800 206 4880. They have a 5 hour portable but only lasts for a couple of hours while on five, they also have a portable that goes to four and can last for six to eight hours. Give them a call. I think that they are all over the USA. Chuck Gerson

There was an article from Cedar Sinai hospital saying that using ZINC was very good. So i have started it at 25 mg per day and i seem to be doing a little worse. Anyone aware of this?
Chuck

Hi ya’ll, it is Chuck. For some reason i have not been receiving any of all this conversation for a month or more. I don’t know why! However, i did see a new Pulmonologist and asked her about the Cedar Sinai material also she had me do a CT and she never got back to me. I called the office a couple of times and left a message but never heard back.…[Read more]

Well hi to all of you who are having all of these problems. I to can join in with all of my heart and brain. First let me address the doctors portion of questioning. There is no one doctor who knows what to do or how to do it. They all differ and that is a real shame. What i have just said is of no help breathing but it may help you understand…[Read more]

Hi guys! Chuck here with questions and some information. First the question is, if the conclusion from the Cedar Sinai says that there is a reduction in our IFP, then why are the few people above saying that they have been taking Zinc for years and do not see any change? I am very familiar with Cedar Sinai and respect them a lot. So can anyone…[Read more]

Hi you all, Chuck here. As i had told you, i was to see my pulmonologist on June 30th. She was not that familiar with Zinc, so i gave her all of the information that i have read here on this site by ya’ll and what my GP had to say as well. She said that she will look into it and get back to me ASAP. You know, the usual runaround. :-} I see my GP…[Read more]

Hi Millie and the gang. First let me correct something. I said Friday the 30th in my past onslaught of words. I meant Thursday the 30th. That said, i started taking the 50 mg of zinc and it has been 5 days now. So far i don’t feel any different. Possibly a little more thirsty, but that is the only change that i have noticed. Again, it’s only been…[Read more]

Millie, you think that you are confused, read all of the above articles and you will find no two are alike. However, as Kitty has said, my GP doctor has also said that 11 mg is about correct for us men because of the possible side effects. So i not only questioned her, i also told her that most everyone on this site is taking 30/40 mg per day. So…[Read more]